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Josie Hau | Source: Courtesy of Josie Hau
Josie Hau | Source: Courtesy of Josie Hau

Josie Hau shares the story of her daughter Maya, born with Down Syndrome, and a congenital heart defect

Dayna Remus
Apr 21, 2023
11:20 A.M.

AmoMama does interviews with women who motivate and inspire us under the Mothers With Will banner. And today, we snagged a conversation with Josie Hau.

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Josie Hau, mom of four, shares the story of her wonderful daughter Maya who was born with Down Syndrome and a congenital heart defect. Josie shares the story of her family, her daughter, and helping other children with heart defects.

An image of Josie Hau smiling. | Source: Courtesy of Josie Hau

An image of Josie Hau smiling. | Source: Courtesy of Josie Hau

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AmoMama started the Mothers With Will project to tell the stories of the strong. And Josie Hau's story is definitely an inspiring one. Hi, Josie; welcome. Thanks for joining us.

"Thank you for having me."

So before we delve into the main part of our chat today, please tell us a little bit about your family.

"So my husband and I have four wonderful daughters. Our oldest, Olive, is seven. Then we have Elodee, Maya, and Juniper."

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I'm sure you have your hands full, but I'm sure it's also equally loving and amazing.

"Yes. I mean, we're all very lucky."

How long have you and Ryan been together?

"We started dating back in 2011, and then got married in 2014, so our anniversary is actually coming up here pretty soon, in January. So we've been married for nine years."

What do you all do for work and play?

"So my husband is a pharmacist, and I used to teach elementary school. I taught first graders, which are six and seven-year-olds. And when I was pregnant with Maya, our third daughter, I ended up leaving teaching so I could stay home and raise the girls.

So for the last four years, I've been doing that. And it was always kind of my dream to stay home and raise my baby. So our dream is a little different than I was anticipating, but it's so wonderful and fulfilling and at the same time exhausting and heartbreaking at times. But, you know, I'm just very fortunate that I get to be home with the girls."

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So you had the two girls, the oldest two, when you fell pregnant with Maya? You had planned to have more than the two, right?

"The two older ones were, at the time I was pregnant, two and one, and I was going in for an ultrasound, pregnant with our third baby. We had been surprised with the genders for the first two. So this ultrasound, the biggest takeaway was if we were going to have a boy or girl. We were going to figure out the gender this time. So that was what the big surprise was in our heads.

So we found out at the 20-week ultrasound; the technician was doing this scan and told us that we were having another girl. So Ryan and I just had happy tears because I also come from a family of all girls. So it just felt right."

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"But then the mood and the energy kind of shifted in the room, and she [the technician] was taking a really long time, and she wasn't really saying anything.

We were at the hospital my husband works at, and so he was just taking a break from his job, and then he was supposed to go back down to the floor to keep working, and he was like, 'Alright well, I'll just let you guys go.' And the doctor said, 'Actually, you need to stay.' Immediately, our hearts sank into our stomachs. What does this mean?

The doctor came in and was looking at the scans. I remember she rested her hand on my leg, and I just kind of lost it because I had no idea what to expect. The words that came out of her mouth were, 'Your daughter has a heart defect. I can't tell you which one. You'll have to see a high-risk specialist and get a fetal echo, but I can tell you that there is something wrong with your baby's heart.' It was the craziest thing."

These bad feelings or these worries and concerns won't be forever

An image of Josie Hau smiling at her baby Maya. | Source: Courtesy of Josie Hau

An image of Josie Hau smiling at her baby Maya. | Source: Courtesy of Josie Hau

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"My mind went blank, but I was so numb I was also spinning out of control. Like, what does this mean? Will she survive? This is something that we just have to monitor. All of these questions were just coming through.

So I called my Mom. She was watching the two girls for me. And I said, 'Can you please just keep them? Like, I can't take care of anybody else right now. I just need to get home and wrap my head around this.' So she did."

"I just sat in the bedroom sobbing because I was so afraid. And I remember I grabbed a bath towel because Kleenexes just weren't big enough for all my tears."

An image of Josie Hau and her baby Maya in the hospital. | Source: Courtesy of Josie Hau

An image of Josie Hau and her baby Maya in the hospital. | Source: Courtesy of Josie Hau

Full disclosure, I've been in your shoes, finding out that my son had heart defects at our 13-week scan. Mine passed away at seven days old. He was a very beautiful baby, and we have no regrets about having him. So just hearing you talk about that feeling like you've been hit by a truck and how you just stopped breathing. It's like; there's just no air in the room. And it's a really, really horrible feeling.

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And I'm sure you agree with me; you wouldn't want anyone else to go through that ever, you know, and the worst part is not knowing because that's really all they tell you. There's something wrong with the heart. Yeah. And you're gonna have to go into more tests. And at that point, you're going, "Do I want to do more tests? Do I just leave it to God? What do I do here?"... And there's no right answer.

"And the people who are supposed to have the answers are the ones who said, 'That's all I can say. I don't know.'"

So, was there ever a question, and you can stop me if this is not something you want to answer...was there ever a question for you about not having her?

"So, that's an interesting story, too, because she did give me some options that I could terminate if I wanted to. And before my husband and I ever even got married, I had asked him those kinds of questions, like, 'If our baby has something wrong with it, would you want an abortion?'"

An image of Josie Hau and her child Maya sitting under a tree together.| Source: Courtesy of Josie Hau

An image of Josie Hau and her child Maya sitting under a tree together.| Source: Courtesy of Josie Hau

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"And we both agreed that that wouldn't be something we were going to do because both of us love children. Me being a teacher, he being in the medical field, we felt that if we did have a baby with special needs or heart or medical needs, that it was meant to be, so it was never an option for us.

I'm so thankful that we talked about it ahead of time because that still was the case. But I actually had told my husband that I've wanted to always adopt a baby with Down syndrome."

Some doctors can get pretty negative, yes. And try to sell you the idea of "Do you really want to go through this?" Okay, so I have to tell you, it fills my heart with joy just knowing that Maya is out there and that she's thriving.

"So I really had to change my whole idea of how things go because I always had just assumed, you know, I'm knowledgeable, I have a very supportive husband, I really feel like my medical team supports us. So I was always just going to kind of trust in that.

And here it was, well, no, we need a plan in place. And so the next 20 weeks of this pregnancy were filled with appointments and scans and so many tears."

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"For me, it was definitely much scarier going into the heart issue knowing that she was going to need surgery for the 1st four or six months, usually a baby with an AV canal defect, which is what she had, needs open heart surgery. So that was much scarier to me than the Down syndrome diagnosis."

She was just seven weeks old when she had her first operation, right?

"Yes. So we were four to six months of having her at home. And, you know, being able to help her heart with medicines. So her heart defect, in simple terms, she had three chambers in her heart instead of four. So usually, they can wait until four to six months before they need to correct it. But about five weeks old, Maya started going into heart failure and had a really hard time eating because she was just so exhausted from her little heart working so hard. And so we went into the hospital, and we tried all the medicines, maxed out the dosages, and nothing was helping."

Tell us about her now.

"So she is four years old, in school in the mornings, part-time. And she is the perfect amount of sweetness and spiciness. She has such an infectious personality that literally wherever we go, people just fall in love with her. And she's honestly just magnetic and magical. She works so hard and is just so smart."

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How has Maya changed your life?

"I think it would just be honestly easier to say all the ways she hasn't changed my life because there's none. Every single part of my life is different and better and deeper and more meaningful — more connections.

You know, I've said that my world has gotten smaller, but my heart has gotten so much bigger because I can connect with so many people so quickly...She opened my eyes and my heart and has just made me so much more confident and willing to put myself out there."

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I want to hear all about your project...The Love for Littles, correct?

"When I was pregnant, I wanted something smaller that I can tie to my wrist so that it stays on, and so we, along with my grandmother — so there was four generations of women — sitting around our kitchen table, making these bracelets, cutting string, tying them to little heart charms and then putting them on a little prayer card or a little card that just said, 'When you see this bracelet on your wrist, please say a prayer and send some love to Maya.'

So we give those to everybody, pretty much anybody who we could think of. So family, friends, colleagues, the teachers I worked with, and our cardiologist wore one. And it turned out to be the sweetest thing."

Please tell the listeners where they're going to be able to find your bracelets and how they can connect with you.

"My website is www.theloveforlittles.com, and on TikTok, Instagram, and Facebook, it's all The Love for Littles. Usually, it's a picture of our bracelets, a bunch of us, or in our family, we all were wearing red bracelets. But sometimes, it might be a picture of me and my sweet little Maya, or it might be the whole family.

I also have a little Etsy shop, but right now, I'm partnering with a nonprofit that donates money to research. So right now, you can buy one of our little bracelets for $6. And all of the proceeds go to the nonprofit."

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So what went through your mind when you discovered you were pregnant after having Maya? How old was Maya? And I need to know, were you scared, nervous, wondering if lightning strikes twice?

"So my husband was actually more wanting to try for a fourth. And it took me a long time to think, even kind of consider it. But then, we tried for one month, I was like, 'Okay, we'll try one month, and if it's meant to be, I'll have a baby,' and I didn't get pregnant, and I was very sad, and so I was like, 'Okay, that's my sign that I really do want this.'

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We had talked that if the baby were to have anything besides just...a normal or like a healthy baby, that we would do it all over again because Maya was worth it. And she was about two and a half when I got pregnant. And I remember going in for that 20-week ultrasound, and we told the ultrasound technician, 'Not to be weird, but can you just look at the heart first?'

I took a picture of the ultrasound, I sent it right to our cardiologist, and I was like, 'Does this baby have four chambers in her heart or in their heart? And he texted back, 'It looks beautiful.' So we were so happy, and we just wanted to have one more baby where we could have a typical newborn stage where it wasn't spent in a hospital and all of this. We just wanted to enjoy having another baby because Maya was very stressful. So we had her, and it turned out that at 35 weeks, my appendix ruptured, and they could, they took out my appendix, and they didn't have to take the baby.

And then I turned septic because there was an abscess. So a week later, I got rushed to the emergency room, and then we had an emergency C-section. So she was born a month early. I was recovering from appendicitis. And that was also a little intense; we just were like, 'Well, okay, now we're really done.'

She [the newborn baby] was good, she needed some antibiotics, so she was in the hospital for a week, but she had a feeding tube as well, and at first, the doctor didn't want us to take her home with that. And we, Ryan and I were like, 'Listen, we know feeding tubes. We got this.'"

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I have to ask, because you are online on all social media, did you get any negative responses when people heard you were pregnant with number four?

"No, I think the people who know me on social media get a pretty good sense of who I am. It was just a lot of congratulations, you know. I think they knew that our plans changed, having Maya, but not that part of our plan."

You've mentioned Juniper; what's the relationship between Maya as the older sister and Juniper? How does she treat the baby?

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"At first, she was very indifferent. She didn't quite care to hold the baby or anything, but now my husband and I very lovingly refer to Maya and Juniper as 'The gruesome twosome.' They're two peas in a pod, and they just love doing kind of wild and naughty stuff together...but Maya has very much loved being in the big sister role."

Nice. What advice would you give to other moms who have just had a diagnosis similar to Maya's, someone who came out of their 13 weeks, 20 weeks, 24-week scan, and they've just been hit with this information, and they still don't know where to go with it?

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"I think it would be to hold on tight during the bad times and know that that won't always last. These bad feelings or these worries and concerns won't be forever.

"And then when things are going really, really good, just enjoy it...just truly enjoy the ordinary days where nothing exciting happens."

Josie, what helps you motivate yourself to take care of your children and to continue helping the people around you? I mean, being a mom is a full-time job. Do you have a self-care routine?

"It's something that I have been working on. After the hospital stay, we were there for 37 days; I really just gave myself little bite-sized pieces to work on.

So, at first, when we first got home, it was just to make sure that Maya got her medicine on time. I did not care how much TV the girls were watching. I didn't care that it was frozen pizza for dinner. It was none of that.

The next step was, okay, once I got into the routine of taking care of Maya and her medicines and feedings, then it was, okay, now I'm going to make one meal today, one healthier meal for the girls. And you know, it was just like all these like little bite-sized pieces...finding the joy in the little things."

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Josie is a testament to a mother's boundless love for their children. She chooses to do what she feels best as a mother or mother-to-be, no matter the challenges she may face or the opinions others may throw her way.

Many moms understand the fear of having a child that may be severely sick. Mothers of special needs kids know how heartsore it can be to watch their child struggle through life.

Josie doesn't only embody the strength of these moms but, more importantly, the source of this strength, which is their unconditional love, a feat more than worthy of carrying AmoMama's Mothers With Will banner.

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The information in this article is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, and images contained on news.AmoMama.com, or available through news.AmoMama.com is for general information purposes only. news.AmoMama.com does not take responsibility for any action taken as a result of reading this article. Before undertaking any course of treatment please consult with your healthcare provider.

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